Most mothers were scared and anxious when they learn that their child will have Down syndrome. A research survey by Dr. Brian Skotko, demonstrated mothers believe physicians need to do a better job in delivering the information. Most felt their obstetricians did not explain Down syndrome adequately. About a quarter learned of the results in person and nearly 75 percent did not have their partner present. About half felt rushed or pressured to decide whether or not to continue the pregnancy. Most felt their obstetricians did not provide enough information. They would have liked the phone numbers of other parents who have children with Down syndrome.
Recommendations based on the survey results included these families needs for up-to-date information on available resources & services & contact with a Down syndrome support group.
The PDSSN Prenatal Outreach Program has trained parents available to talk with parents who receive a prenatal diagnosis of Down syndrome. We provide:
Written up-to-date information about Down Syndrome and the options available to you.
One-on-one parent contact for both those mothers who are continuing their pregnancy and for those who are exploring other options is available by the PDSSN.
This program is free and available to any expectant parent who receives a prenatal diagnosis of Down syndrome. You can contact us on your own or through your obstetrician. Once we have your number we will call to arrange a time to talk. Parent representatives will provide information about Down syndrome and resources. They will not attempt to influence any decisions you may be considering.
Down Syndrome Prenatal Testing Pamphlet:
The Global Down Syndrome Foundation and the National Down Syndrome Congress have jointly created the Down Syndrome Prenatal Testing Pamphlet, which will provide factual and up-to-date information about Down syndrome to pregnant women through various professionals, including doctors, genetic counselors and prenatal testing companies. The pamphlet will be available free of charge in doctor’s offices, at advocacy organizations, and for digital download online at www.downsyndrometest.org.
The pamphlet underscores the Global Down Syndrome Foundation’s dedication to ensuring pregnant women get accurate information about Down syndrome at the point of diagnosis. Such accurate information is called for in the 2008 Prenatally and Postnatally Diagnosed Condition Awareness Act, sponsored by Sens. Ted Kennedy (D-Mass.) and Sam Brownback (R-Kan.).
Down Syndrome in the 21st Century
See the wonderful abilities and potential of people with Down syndrome. From infancy to adulthood, this 2008 video showcases individuals with Down syndrome living their lives to the fullest and doing things “not thought possible” — using sign language, swimming, giving a school report, dancing, gossiping, holding a job and giving a speech. Made especially for new parents of a child with Down syndrome, this is for anyone who wants a current, accurate look at Down syndrome today. Produced by the Down Syndrome Association of Central Texas. Click this link to watch the video: Down Syndrome in the 21st Century.